Waiting in crisis

In Australia, eating disorders make up some of the most common chronic illnesses among young women and, of all mental illnesses, they have the highest mortality rate. Erin Stewart asks why, then, is it so hard for sufferers to find help?

According to a report released recently by The Butterfly Foundation, more than 900,000 people in Australia had an eating disorder in 2012. On current projections, that number will rise to over a million by 2022. Australian women are more likely to have a diagnosed eating disorder in their lifetime than breast cancer. Further, according to 2007 ABS data, eating disorders are amongst the most common reasons why adolescent women are hospitalised. Anorexia is the third most common chronic illness amongst young women aged between 15-24 (after asthma and obesity). In 2012, the total socio-economic cost of eating disorders was just under $70 billion. Of all mental illnesses, eating disorders have the highest mortality rate.

While those figures are scary, what's more scary is how hard it is for people with eating disorders in Australia to find help. For instance, in New South Wales there are only five public beds dedicated to eating disorder treatment. Three of those beds are only available to patients in the Westmead catchment area. The other two are located at the Royal Prince Alfred Hospital. This is for the entire state; patients from rural NSW often need to travel to Sydney in order to receive treatment. The waiting lists for these beds can be months long.

In the Introduction to Paying the Price, a report released last year by The Butterfly Foundation, 2010 Australian of the Year Pat McGorry wrote of eating disorders, "I believe their debilitating effects are comparable to psychosis and schizophrenia." Yet, it appears Australians with eating disorders struggle to find help and resources which are both timely and affordable.

COMPLEX CONDITIONS, CRISIS SITUATIONS

Eating disorders encompass a wide variety of destructive eating patterns. The Diagnostic and Statistical Manual of Mental Disorders defines four main types: Anorexia is characterised by a refusal to maintain a healthy body weight, enacted through self-starvation; Bulimia is characterised by recurrent behaviours of binging on excessive amounts of food and purging through vomiting, use of laxatives, or exercise; Eating disorders not otherwise specified (EDNOS) is less well-known and refers generally disordered eating which does not meet diagnostic criteria for anorexia or bulimia but which may have similar features of one or both of the disorders; and Binge Eating Disorder, which is characterised by compulsive overeating or binging without compensatory purging.

In NSW, if an eating disorder patient in crisis seeks admission at the Royal Prince Alfred Hospital and eventually gets in, the bed is in a general psychiatric ward. Patients with eating disorders - usually young women, often with a history of trauma - are in the same quarters as usually quite older, male patients who may be suffering from a full-blown psychosis. Treatment in such a context is far from ideal.

Sarah Spence of The Butterfly Foundation says that in a crisis situation, patients will present to hospital not with an eating disorder but, "with complications due to an eating disorder" such as low blood pressure, low heart rate, and weights that are so low they are unstable. Hospitals will treat patients generally (not in a psychiatric ward) until the immediate danger is over. "It is rare to find a doctor who will treat someone presenting with these symptoms as an eating disorder patient," says Spence. "You have to be in a really dire situation to get treatment."

For those lucky enough to have private health insurance, the situation is still fraught. In NSW there are only two private hospitals with eating disorder treatment programmes, both with a 4 to 12 week waiting list.

Outpatient costs can also be hefty. Currently, Medicare provides a rebate for ten sessions with a psychologist per calendar year. When these are used up, patients are forced to pay for their own sessions, which can be very expensive. "Ten sessions barely touches the surface," says Olivia Patrick, a clinical psychologist specialising in eating disorders. Yet, as a result of a lack of funding, patients sometimes opt to have less frequent sessions, or drop out of treatment entirely.

Patrick adds that while "there is no such thing as a typical eating disorder case", illnesses such as anorexia and bulimia "can set you back years". On average, people with those particular eating disorders require 7 to 10 years of treatment after their first diagnosis before they can make a full recovery.

The limitations people with eating disorders encounter when trying to seek treatment exacerbates their condition. Patrick says that the rebate allotment often creates the false expectation amongst patients "that someone should get better in 10 sessions". Moreover, as patients wait long periods to be hospitalised, their condition deteriorates. "They often need a longer admission", says Patrick, compared to what the length of their admission would have been if they were able to get treatment straightaway.

FED UP IN TOTAL DESPERATION

While this article has focused on services for eating disorder patients based in NSW, the situation is not much better across the rest of the country. Patrick can point to patients who have relocated from South Australia to Sydney because the available care is better. The Paying the Price report further documents incidences of patients travelling to the US or other countries in order to receive care at their own huge expense. Spence believes that "other countries have better access to treatment".

Ella Graham, a student aged 23, was diagnosed with EDNOS and has been living with the illness for 11 years. Around six months ago, living alone in Sydney, she found herself acutely unwell with a relapse of her disorder, unable to find a bed and deteriorating quickly. She was "patched up in emergency" a few times after presenting for eating disorder complications such as dehydration, electrolyte imbalances, and low blood sugar. She was told on these occasions, "You're not in total heart failure, so we'll send you home". The waiting list for private wards was over eight weeks; because she wasn't suicidal, general psychiatric wards were not appropriate and she was deemed too unwell for those wards anyway. She was put on a waiting list for a bed at the Royal Prince Alfred Hospital instead.

Her health during this time declined steadily. "My GP would call security to drive me [a relatively short distance] to emergency because I was too weak to walk and I wouldn't accept an ambulance." At home she would pass out, unable to get up for hours and unable to call anyone. While her friends offered her their support and visited her, "I was at a total crisis point and I had nowhere to go."

"In total desperation", Graham decided to start a website at 1am one morning, called Fed Up. The website documents her and others' difficulty in accessing treatment calls on the NSW state government to improve the situation. "I don't know how I did it," she said, given the severity of her condition at the time. She named it 'Fed Up' because "that was the way I felt". Only later did she realise that it was an appropriate pun. "I had known it was an issue affecting people other than me, I knew it wouldn't just be about me." Graham reports that she's now doing much better.

Indeed, the Fed Up website includes stories from people with eating disorders across NSW who have experienced difficulty finding treatment, particularly inpatient treatment. Some were refused treatment because their situation wasn't dire enough. Some paid large amounts of money out-of-pocket for treatment. Some travelled far distances to find treatment. Graham herself once travelled from her home in Sydney to Geelong to access appropriate care.

THE STING OF STIGMA AND MEDIA REPORTING

Given the extreme prevalence of eating disorders in Australia, it seems absurd that accessing treatment is so difficult, expensive, and can take a very long time. Both Spence and Patrick point to the stigma associated with eating disorders as a factor contributing to this. "There's an incorrect perception of what an eating disorder is", says Spence. It's considered to be a teenage girl thing, a diet gone wrong, and someone with an eating disorder "just needs to eat". Patrick agrees, saying eating disorders are sometimes "seen as a lifestyle choice rather than a serious illness".

Graham encountered this stigma firsthand when she went to general emergency. She faced comments such as "Isn't it embarrassing that you keep having to show us your tits?" when she took her top off for an ECG, "Shut up and eat", "I wish I had your self-control" and "I'd like to not eat for that long". Alarmingly, all these comments came from health workers.

Spence and Patrick believe that awareness is growing about how serious eating disorders can be. "The tide is slowly turning," says Spence. "People are realising that eating disorders are real mental illnesses".

Yet, there are still issues of reporting and portrayal of eating disorders in the media. Some articles about eating disorders, particularly anorexia, sensationalise mental illness by listing the low weights, calorie intakes, and clothing sizes of those they feature. Aside from the numbers possibly acting as a trigger for readers with eating disorders, the articles tend to gloss over the reality behind the numbers and instead emphasise the 'skinniness' of sufferers. In reporting eating disorders (usually anorexia in particular), media reports tend to deny the reality of complex mental illnesses that have consequences far more serious than one's appearance.

Adding to the complexity is the fact that some eating disorders are simply not generally understood. In the case of binge eating disorder, for instance, Patrick says that as patients who present to doctors are often overweight, "they are prescribed diets without screening for binge eating disorder. Diets can make binge eating disorder much worse." Spence further points out that even a well-known disorder such as bulimia can be misrecognised as "you can't always see changes in body shape". Because these disorders are not always visible, patients are sometimes not recognised as requiring help.

BETTER SERVICES NOW

Last year, COAG released a report, The Roadmap for Healthcare Reform, which claims to commit to mental health reform "as an ongoing national priority". The report claims that "ambitious but achievable" targets for reform will be finalised by the end of this year. Unfortunately, this will be of very little comfort to those who need better services now.

The situation is a dangerous one. "People die," says Graham. Yet, eating disorders are very treatable. "There's no need for people to live like this."

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Comments (2)

Marc Bryant (Mindframe) :

The Mindframe National Media Initiative in Australia provides the comprehensive guidelines for media portrayals of mental illness and suicide, and seen as international leaders in this area.

Last year, in collaboration with the Butterfly Foundation and NEDC, Mindframe launched a new online media guide for reporting eating disorders (which can be found here: http://www.mindframe-media.info/__data/assets/pdf_file/0010/5140/MF-NEDC-Resource.pdf )

A selection of magazine and national news journalists took part in an advisory group to help inform the final guide to ensure it was fit for purpose.

Mindframe has been disseminating the guide over the past six months, with positive support from the media during training sessions with media professionals. Mindframe also intends to imbed the guide into the current curriculum resources for journalism courses at Australian universities as part of the Mindframe for Journalism Education project (which has been running for 15 years and funded by the Australian Government).More information about Mindframe can be found here www.mindframe-meddia.info

aelious :

26 Mar 2013 12:13:44pm

If you want proof of the ability of mass commercial media to influence & control the minds & the actions of the ordinary person then this issue is such proof. If you can influence (control) the fundamental factors making up self image then how much more easy is it to influence political (voting) & economic (consuming) behaviours!Let's get real & start pointing the finger at the real culprits those who use others for their personal economic gain.Wake up folks before it is too late to correct what has gone wrong generally in our society.Yes you live in a society where shared responsibilities exist for your own long term benefit & not an economy of self interest!

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